25th June 2014

For those of you who couldn’t make the CF Parents Info Night in June [2014], here’s an update for you with all the content presented on the night.

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John Widger | CF Research & News Update

It was great to get a sense from Dr John Widger about the status of research in the pipeline. Some exciting news about the third round trials of ivacaftor (Kalydeco™) in combination with lumacaftor for homozygous delta F508 CFers!

Mike had a terrific round up of physio updates with some exciting news from the recent SCH trial indicating that “cough samples” were proving to be a good indicator of what may be in the lungs. His headline was that if a child has a bacteria in the lung (psuedomonas for example), research suggests that the team would detect that in the cough sample which is great news. Although we don’t know whether the bacteria in the throat has gone to the lungs, we do know that if a child has bacteria in the lung, it is likely to show up in the mucus sample collected via the throat which is a significant find.View Mike’s presentation here

Claire | Independence and Compliance
Clare (our clinical psychologist) talked us through the different stages and ages children go through in terms of independence and how that relates to compliance. How we balance the responsibilities for care between ourselves and our kids. We could have done a whole workshop on that topic as compliance is something we all face and would be great to swap tips and how-tos from other parents.View Clare’s presentation here

Amanda Thomsen & Penny Jones | CAPAC what’s it all about?
Amanda (our CF Nurse) and Penny (a CF mother) talked in detail about how the CAPAC system works for those children who are able to participate in that care model. A terrific insight for those who haven’t yet experienced CAPAC and great to get a sense of just how life changing the alternative models of care our team offers, can be.Amanda’s presentation here

Dr Yvonne Belessis | Best Practice & Raising the bar
And lastly Dr Yvonne Belessis spoke about how we go about making our CF the best centre possible. She explained the CF data registry and how international centres (and Australian centres) measure and compare themselves in order to model themselves on best practice. She also highlighted the need for transparency in how centres are performing (ours included) and presented the latest SCH data and relative rankings.View Yvonne’s presentation here

A great follow up to Yvonne’s presentation is the Bell Curve article I mentioned on the night. For those of you who haven’t read it, please do take a moment (if you can find a moment!) and have a good read through this. More than anything its an exciting time as we move towards greater transparency within our own clinic, best practice modelling and parents and doctors working in true partnership to improve outcomes.

It feels like there’s great momentum at the moment from both parents and doctors to up the ante and in light of that, we had our first meeting of the Sydney Children’s CF Parents Advisory Council a few weeks ago. It sounds like some people may have missed the email that was sent out so we’d like to resend all the details and encourage everyone to be involved.

If you’re not able to participate at the moment (we totally get the busy kids, life thing), if you could return email to jen@ecooutdoor.com.au and just indicate whether you’re happy for us to put you on our mailing list to keep you in the loop on what’s happening. You can always put your hand up to help at a later date, you don’t need to commit now but just put your name on the email list.

We already have our first project cut out for us and a long list of key focus areas that’s parents have indicated they’d like to tackle. Once I get final responses back, I’ll circulate an update with all those key topics and confirm our next meeting in July.

Any questions feel free to give me a shout

Many thanks!
Jen Stumbles
jen@ecooutdoor.com.au
Chair of the Parents Advisory Council